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The Voice

March 12, 2014

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This isn’t a blog about my favourite Valleys Boyo.  It is a restatement of the view I have held for some time that we need to see a step change in how we place the voice of people with lived experience of mental health and other conditions at the centre of decision making in the NHS.

The reason for writing this tonight is the renewed inspiration I have gained from spending the day with well over a 100 individuals who are using secure mental health services at the Second National Service User Awards.  The Awards, organised and supported by Cygnet Healthcare, celebrate the achievements of people using secure mental health services in supporting their own recovery, helping other service users or carers and families, improving services, training staff or making a wider contribution to their community.

I have been lucky enough to be a judge for both years of the event and it is one of the best things I have done in that time.  Across the piece the quality of entries is extremely high and they come from right across the spectrum of secure providers, including this year some from high secure services.  Individually each story is often moving when you consider the dark places which many people in secure care have come from.  Choosing winners is invidious.

Some of the projects put forward tackled some of the most stigmatising aspects of mental health such as attitudes towards personality order and self-harm.  They demonstrated the impact which service user led training can have in helping staff understand these issues and see the person behind them.  Other schemes showed how service users can take control of their own care, chairing their own CPA meetings or developing a short hand guide to how they feel and want to be treated when they are unwell.  Many focused on how people can support their peers and share that most valuable of therapeutic processes the insight that someone has trodden the same path and come out the other end.

More than anything the awards were indicative for me of a profoundly hopeful message that recovery and co-production are beginning to take root in what many would have said would have been the most difficult environment anywhere in the NHS – that environment where individuals are derived of their liberty.

So what does my inspiring day with secure care service users have to say about the development of the voice of people who use services more widely?

Like so many issues I have been involved in recent years the rhetoric is running the right way but the reality on the ground is still very patchy.  Service user voices are more prominent but those voices are often heard too peripherally or too late.  They asked to participate in structures which are still designed around the needs of managers or clinicians and where the use of acronyms is seen as some kind of sign of authority.  The big issues are still often decided elsewhere.

So to finish why does it matter.  There are three reasons all of which were on view in the initiatives we celebrated in today’s awards.

First people with direct experience are the best placed, individually and collectively, to define and interpret what it is like to live with a long term condition.  That insight and information should be central to how health professionals are trained to do their jobs and should be crucial in the judgements they make on how best to support and help someone they are working with.  This is the secret of co-produced healthcare.

Second the views and feedback are people with direct experience of services should be central in defining what good care looks like, in judging whether the care which has been delivered meets those standards and crucially in determining the best use of resources.  In my experience, most people who use services recognise the preciousness of the resources invested in supporting them.  They don’t want to see those resources wasted in interventions which are duplicated or of no effective value.  They crucially recognise where simple resources invested sooner can save the greater costs incurred at a later date when someone gets to crisis point.

Finally the voice of those with direct experience is of immense value in supporting others who are coming to terms with the same condition or issues.  There are things which are so much easier to take in if they come from someone who has trodden the same path and peer support should be a routine intervention, not only in mental health but in other areas too.

Times are tough at present and there are immense financial challenges facing the health and social care system.   Harnessing the value of the voice of lived experience is one of the few transformatory tools at our disposal.  Let’s use it.

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